~Short term memory loss 4 anyone on their PMR journey with steroids?~

~Short term memory loss 4 anyone on their PMR journey with steroids?~

~Good morning to you all from NZ~

Would be keen to hear from those who may have noted from their PMR journey with prx'd steroid meds if you may have been aware of short term memory loss?

I ask in light of my now 18+ month PMR journey and hydrocortisone therapy as pred initially cause erosions in gut & PPI brought its awful side effects too. Paid to have my meds made up acid resistant capsule to break down in bowel (for those who do not know) & proved to work well.

Am very aware that my short term memory has been effected along the way and need to write things down to remember - can't hold anything in my short term memory without the need to do this.

Am rather concerned and wonder if this will improve as I taper (now down to 8mg hydrocort which equivalent to 2.25mg pred).

Will my memory come back? Some times my dreams at night are laced with not being able to find things, nor my car in a parking lot - this did actually momentarily happen to me some months ago.

Did have an MRI brain scan prior to PMR (some 4 years or so ago) which revealed small vessel ischemic brain disease which told is very common. I have had history of migraines which no doubt has influenced this.

Any thoughts from anyone how I can claim my memory back if at all? I am only early 60's and fighting on as we do and would like to consider going back to studying but can't see this happening yet.

Blessings in the meantime in the hope you are feeling well today:)

22 Replies

  • Hello Megans, greetings from the UK.

    Just a quick-ish reply..

    Well, in my opinion (and I stress, only my opinion since I am not a medic..), yes with regards to (perceived, if not actual) 'memory loss' in that, with PMR or any serious illness, both body and mind are under great Strain. As a result, we are undergoing a period of physiological and psychological fatigue. And, from most angles, this can affect our cognitive performance in many ways (e.g. attention span, recall, observation skills, mental energy, mood, etc). I know this well, on my journey with PMR.

    In addition, it's well-known that the powerful drugs (preds) that manage the physical symptoms of PMR can also bring so many side-effects. Just look at the warnings on the packet. All I would say is, don't get spooked by them!

    Having said this, unless you have an underlying organic, degenerative disease affecting the brain, the perception of 'memory loss' is probably more due to fear and anxiety more than anything.

    On the positive side: much research suggests that getting older has relatively little effect on memory, and that many 90+-year olds have an excellent recall of the 'big picture' of past events, even if they forget where they put their socks 10 minutes ago or parked their car (but we are all capable of this, at any age!).

    So, try not to worry unduly. Easier said than done, I know, but your perceptions of memory loss are probably more due to (understandable, in context) anxiety than anything else. It's ok to make lists, I do it all the time.

    As for fearful dreams (I know this phenomenon well..!), they are often a safe space in the sub-conscious / 'sleeping' mind to process, and make sense of the natural fears that are perhaps too difficult to face in our waking hours. A 'Dream diary' can be a useful thing to keep when under such stress and strain.

    The main thing is, have faith in yourself (and your memory cells!), and keep a steady head on the journey.

    Best thoughts

    MB :-)

  • Hi markbenjamin57

    Thank u for your response, appreciated indeed.

    Of course you and I wired differently, not to diminish your feedback in any way as great food for thought.

    Your comments re "physiological and psychological fatigue" brings me to say that I posted a questions some 2 or more weeks ago regarding if research has been done in this area? Don't think it quite reached this site somehow as haven't seen the post or feedback.

    I certainly feel that I have undergone some "physiological plus psychological changes" on most fronts and a range of other complaints associated or magnified as a result of PMR + my steroid use. I'm appreciate I am not the only one.

    I know that there has been a certain level of anxiety associated with my breathing woes triggered since attempting to taper. Obviously my childhood asthma memories at a deeper level have surfaced - no inhalers back then so one struggled on, surviving & thriving which keeps me fighting on today, especially to find answers. Unbeknown at that time in my childhood I had a hole in my heart & when found 20+ years later, the bypass surgery affected memory for some 5 to 6 weeks. Couldn't even string 2 words together when writing my daily diary - improved with time but was part & parcel of the surgery procedure.

    I am not conscious of worrying unduly but do get concerned when constantly parting with money to see "Dr plus some Specialists" who don't have answers - they tell me its part of the "aging process" - way too convenient for my liking. I do acknowledge however that the aging process seems to have advanced on the inside & that is what I find difficult to process some days.

    Must say have enjoyed your great sense of humor in previous posts which resonates with me - keep it going!

    Blessings :)

  • Hi Megams

    Thanks for your lovely reply and an interesting post. Wow, you have been through it!

    I agree with you about GPs / specialists and am sure that many use the catch-all phrase 'ageing process' when they just don't know what's going on. As you say, a convenient way to kick the can down the road unless there's an obvious / significant problem and / or don't want to commit themselves ? Mmmm...

    Also, as you say, I'm sure that 'processing' these changes and making some sense of them in your own mind (with whatever logic you want to apply!) helps a little in the coping process at least. Uncertainty and confusion over health matters can be very stressful, and this doesn't contribute to a sense of calmness of mind.

    I'm a great believer in trying to see the lighter side of adversity, and a healthy sense of humour can help us get through the tough bits in life.

    Now, where are my reading glasses? Ah, yes, perched on top of my silly head... ;-)

    Best thoughts and try to keep smiling on the journey

    MB :-)

  • MB, I think I love you.

  • Wow Zacsmimi! But that's our secret - don't tell the others here or they might become jealous.. ;-) :-D

  • Hi

    Most defiantly have problems with recalling names of items very usual in autoimmune diseases such as PMR,CFS ,Thyroid to name a few also with Fibro . Memory loss commonly none as brain fog.

    Vitamin deficiency can also be to blame so I would have your vitamin levels tested vitamin D is often in short supply .

    Best Wishes


  • Hello Megams

    As markbenjamin57 says, a number of factors can contribute to difficulties with memory and cognitive function. These can include the effects of the underlying condition, fatigue, insomnia from various things including pain and steroids, pain as an entity on its own, and any low mood effects, which have their own impact on concentration and memory.

    In terms of medication, there are several high-level studies that have looked at the effects of both short-term and long-term steroid medication on cognitive function. These have found that people demonstrate difficulties in particular with working memory, executive function (part of which helps us plan tasks and carry them out), sustained concentration and being able to focus on things for an amount of time. Information acquired in the past does not seem to be affected in the way that short-term memory does.

    I'm reducing down from 60mg prednisolone and am now at 20mg. I had ridiculous difficulties retaining very simple information whilst on higher doses of prednisolone. I couldn't remember something I'd thought of picking up only a minute before, so kept finding myself in a room not knowing why I'd gone in there. I was forgetting things I'd thought of only seconds before. Making lots of notes and keeping lists definitely helped, as did deciding on only two or three things to do in a day - which I put on a list on the fridge. That helped me keep track of the most important tasks for the day.

    I also found that the working memory problems meant I couldn't multi-task even at a fairly basic level. My brain couldn't work out how to do two things at once. For example I'd have a phone conversation holding on to a bottle as my hand couldn't work out how to put it down. This was very strange at first but when I put it into a neuro-cognitive context it was less worrying and became more of an interesting observation.

    These working memory and planning problems have definitely improved as I've reduced the steroids. If you're concerned, or would like to have your memory monitored, ask your GP or specialist if you can be referred to a memory clinic or neuro-psychologist for a baseline set of tests. These are non-intrusive quiz-like tests that can establish a comparison point for later on. It's always useful to have a baseline report in case you remain concerned at a later stage. In addition, the neuro-psychologist may be able to suggest some strategies to help with the memory difficulties you've noticed at the moment.

  • Hi Cloudgazer6

    Thank you for your response which I found most interesting and informative. Would you know how I could link into this information please?

    I have just responded to markbenjamin57, so for the sake of repeating myself unduly please read.

    Due to ongoing gut/intestinal issues (long standing) sought advice from Gastro Spec this week who specializes (for the want of a better word) "faecal transplant" - my Rheumy recommended I at least consult and discuss my options. My gut along with rest of body appears to be racked with candida despite my best efforts dietary wise along with an ESBL problem picked up after couple of stays in hospital recently with myocarditis. Meds prx'd for this added to gut issues at the time.

    Gastro Spec. did not recommend a "faecal transplant" for me due to of my history & with showing signs of short term memory loss even though tapering & on a lower dose now.

    Also, thank you so much for sharing how your short term memory played out for you and your honesty surrounding this - I find that if I don't laugh at myself for silly mistakes that I make , I would simply dissolve into tears which I can ill afford, so draining.

    I intend now to seek the advice from a neuro-psychologist on your recommendation.

    Keep fighting the good fight.


  • Hi Megams

    I can certainly look out some references for you. Could I just check - what type of information would you find most helpful?

  • Hi CloudGazer6 - it was your comments re the" medication and the high level studies looking at the affects of the meds (long term in my case) on the cognitive function".


  • Hi Megams

    Here are a few references. Obviously, these cover a wide range of people, situations, medical conditions and prescribing so should be read judiciously. Don't get anxious reading them - everyone is different and doctors are the best placed to consider this with you in the overall context of all aspects of the situation.




    Do let me know if you have any questions.

  • Hi CloudGazer once more - thank u ever so much and have managed to read the first link which is most interesting - will come back to it & re-read tomorrow along with the rest of them as time to head to bed now.

    I sincerely appreciate your support & help and will come back to you should I need more answers.

    Blessings in the meantime :)

  • Hi Rose54

    Thank you for your reply, appreciated.

    Fortunately have been an avid vitamin D fan for a long time, levels tickety boo with latest bloods..

    My brain fog not always with me but short term memory appears to be - pushing on as we do.


  • May I ask a silly question. What does tickety boo mean?

  • ~Sure Zacsmini - not a silly question at all and sorry for using a form of colloquialism that I should realize that not everyone would understand.

    In my thread it was used to quantify and qualify that my Vit D levels were good and within the range they should have been.

    Hope that helps :)

  • Thank you for sharing the memory problem the times over the last few months I have asked myself what is going on with me ie saying something one minute and within say 15 mins have forgotten and have to try my hardest to remember what I have said

    I feel a bit better now thank you

    Take care

  • Hi Rusty8 - thank you for sharing your thoughts and my sentiments exactly.

    I think part of all this is wanting to preserve our sanity in the face of adversity and display thus to our family & spouse that we are doing OK.

    If only they knew! I have even found I have occasionally stuttered trying to find the right word and acknowledging this right here and now is like going into the confessional for me.

    Anyway abundant blessings and thank goodness for this website:)

  • Hi Rusty8. I have always been absent-minded and am perhaps a bit more so now after 5 years of PMR and pred. But I notice that some friends of similar age (I'm 75) are just the same, so it doesn't worry me overmuch. I've always had that thing about going upstairs and forgetting what I'm looking for!

  • Hi Megams. Just food for thought - what I notice about memory loss (totally love the term "brain fog") is that sometimes I feel too fatigued to concentrate long enough to complete a thought or completely conjure up a memory. It's like my bodies fatigue carries through to my brain. Does that make sense to anyone? Also, on another topic - has anyone else experienced a coated tongue (not thrush).? Was told it is a side effect from prednisone but haven't heard anyone mentioning it???

  • Hi Alison - thank you for your kind contribution of which I appreciate very much - I find my brain is sharper some mornings after a decent nights sleep. All goes to pot should my night be disturbed sleep wise which makes sense.

    Yes my tongue at times appears coated more towards the back & I am very careful now when brushing the scum off - I am sure the skin has thinned slightly. I thought it was possibly because I appear to have become a mouth breather at some stage early hours of the morning & wake up often with an exceptionally dry mouth even though I am wearing a full mask with CPAP machine. This may have been thrush, may not have been either, so am unsure because my thrush only went over the top with continuous bombardment of heart related meds + a new asthma preventative inhaler for a time recently. Fortunately not on any of those presently. Steroids add to thrush issues I am told which was news to me.

    Moral of this story - everything seems to dry up and drop off!!

    Blessings :)

  • Can't remember (haha) but are you on statins? They can severely affect short term memory. Sorry it's late...

  • Was very briefly whilst in hospital in April suspected heart attack - did not agree with me one bit.

    Interestingly enough since that last post I was obviously struggling with mild depression.

    Aropax 20mg has made a great deal of difference & not weeping daily as have been, memory way better. Asthma meds including Ventolin added to tipping the already fine balance.

    Onwards & upwards


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